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Stoma Revision Nightmare

Posted by Bellily, on Tue Dec 03, 2019 5:53 pm

sorry dave, didn't read the previous comment correctly then.  fingers and toes crossed that you get a good rosebud then, perimeter level with the abdomen, nice height, hole in the center, all of that.  knowing what i know now, i'd make him explain in detail how that's going to happen, referring to imaging, all of that. 

bless you.. ain't all of this so much fun?

Reply by Bellily, on Sun Dec 08, 2019 11:02 am
w30bob wrote:

Hmmmm.............calving teats...........gives me an idea.  Check these out......rubber and they compress.  Not perfect, but another catagory to investigate.  Also on Amazon.  

 



guess what aisle i went down at the store yesterday? 

silicone experiment has failed so far, so nipples..

this is what i'm going to try to make work this afternoon:

i'd need to paste-up the connection a bit of course.  if this works, the bonus will be being able to see if output is creeping under the nipple.  i'm intending to use the medical adhesive (osto-bond.. not great, the hollister adhesive arrived yesterday) to adhere it.

Reply by newyorktorque, on Sun Dec 08, 2019 8:42 pm

Lookin mighty crafty above.

Reply by Bellily, on Sun Dec 08, 2019 9:16 pm

confession: i said i was going to try this on today but haven't.

ostomy nurse gave me a big ol' belt which makes me look and feel like a very misshapen ant.  i hate that belt and am scared to take it off because the poop's not that far out of the perimeter yet and might hold things together through tomorrow although the usual inch radius around the stoma has broken free; the rest holding together is my new best case .. so i'm holding on a little longer before i strap the above pic thing in, don't want to risk major malfunction throughout the night or at work tomorrow.  truth: i'm nervous about it.  plus i changed wafers 3x in the last 24 hrs and don't feel like doing it again. 

Reply by w30bob, on Mon Dec 09, 2019 1:13 am

Hi Be,

  I hear ya.  I often want to try another brand barrier but "today is never a good day"......mostly because I don't want a mess at work or whatever I have planned for the day. It just never seems like a good time to experiment.  I've got a bunch of "use or lose" vacation days that I have have to take before the New Year......so I'll play then.

Regards,

Bob

Reply by Tickpol , on Mon Dec 09, 2019 9:43 am
w30bob wrote:

Hi Be,

  I hear ya.  I often want to try another brand barrier but "today is never a good day"......mostly because I don't want a mess at work or whatever I have planned for the day. It just never seems like a good time to experiment.  I've got a bunch of "use or lose" vacation days that I have have to take before the New Year......so I'll play then.

Regards,

Bob


Don't be surprised if the only folks who want to see your vacation pictures are on this site.

 

Dave

Reply by Bellily, on Mon Dec 09, 2019 6:28 pm

came home early from work, stink escaping (again), got home before the brown escaped, and actually put the nipple contraption on.

it feels pretty good.  it feels kinda... pre-revision normal.  !!

depth is just right, probably should've cut the stoma hole a little bigger, definitely should've pasted up the nipple-flange junction but didn't (brain seized up trying to figure out what to use... paste? too much residue that's hard to get off the skin; barrier ring stretched out? which one..; strip paste? only have a little left .. pft, brain no more thinky).  it's an experiment and i have another nipple for try two, it is what it is.

after so many experiments failing, i'm prepared for this one to fail, too.  whatever happens, i'll post it here.  (not that y'all don't have better things to read and talk about)

Reply by w30bob, on Tue Dec 10, 2019 6:23 am

Hi Be, 

  Think positive! I know.....that's hard to do when failure becomes commonplace. Do you have a problem with getting say an adapt ring off your skin......or does that leave pieces behind or just stick too well? Reason I ask is maybe you could take a ring.....ball it up.....and then roll it out thin with a rolling pin (you have to use a sheet of plastic between the rolling pin and the balled up ring or it will stick to the pin). Then cut out the shape of an unrolled cone (use a paper pattern of a cone that fits your stoma cavity) and press that adapt ring into your cavity before you insert the rubber nipple. So in effect the sides of the nipple will be glued to the cavity wall everywhere along the sides of the nipple......or maybe you're doing this already. If you push the silicone nipple down far enough over your stoma and then press the sides of the rubber into the cavity walls (which are now covered with a layer of adapt ring material) I would think that would seal well. What says you?

;O)

Bob

Reply by Bellily, on Tue Dec 10, 2019 7:12 am

one of the "bonuses" i am hoping to get... if this works ... is being able to see the peristomal skin and whether or not anything is creeping below it.  i'm probably not going to get out rolling pins and plastic wrap yet, but appreciate your thinking this out.  i like your engineering mind.  : )

this thing stayed on through the night.  the glue feels a little weird BUT for the first time since the revision i have slept well, able to roll from side to side, stretch like a cat, without the lift-off/tugging/snagging feeling.  that alone makes me giddy.

Reply by w30bob, on Thu Dec 12, 2019 1:08 am

Wow.........that's great to hear!  But if you ever do crack out the rolling pin......take your barrier out of it's plastic wrapper and use the wrapper between the rolling pin and the ring material you are flattening. Parchment paper leaves a residue on the ring material and plastic wrap sticks too well, making it hard to get the squished ring material off.  Just FYI.

Later,

Bob

Reply by newyorktorque, on Thu Dec 12, 2019 12:32 pm

wtg bellily.  this is good news to hear.  you're obviously making headway.  what man can conceive man can achieve!

Reply by Bellily, on Mon Dec 16, 2019 7:21 pm

well....

it didn't work out.

here's why:

the nipple-flange coupling didn't hold out after all.  tried cementing it in (first with paste, then osto-bond, then flange material) but it came loose.  brown.

i would've worked on that if it weren't for...

... the smell.  those nipples retain odor.  all of me smelled brown.

and:

the adapt glue with the nipple made something unsavory happen, don't know what exactly but maybe it "melted" the nipple material and the whole thing made my skin completely freak out.  ouch!

 

here's what's in the works:

a kind woc nurse is trying to get me in with another colorectal surgeon to revise the revision, to pull a little bit more of colon through to allow the daggone thing to sit in the light instead of in this funnel cave.  i'm praying for this to happen sooner rather than later, ideally THIS WEEK!  because my skin is freaked out, poop on it 24/7, and to get this done before year's end would be the best christmas present ever.

Reply by Bill, on Tue Dec 17, 2019 1:50 am

Hello Bellily.

So sorry to hear that your efforts have not worked. However, in my experience, this effort is often not wasted. When I talk to the medics about what I have tried in order to resolve issues on my own behalf, they have been impressed and tend to speed upm their own efforts to help me in their own way. 

I do hope you get a revision sooner rather than later, and, please let us know how you get on.

Best wishes

Bill

Reply by Bellily, on Tue Dec 17, 2019 4:20 pm

thank you for the nice comment, bill.

maybe this all isn't wasted..

guess what?  the new colorectal surgeon had an opening today and he was impressed with the nipple contraption concept.  haha.

i squeezed my belly around the stoma when he walked in and said "hello" in a squeaky stoma voice.

 

looks like the revision revision is coming. ct scan later this week and then ... 

Reply by newyorktorque, on Tue Dec 17, 2019 6:41 pm

good luck bellily.  hope your revision comes soon and the bag problem ends.

Reply by w30bob, on Tue Dec 17, 2019 10:17 pm

Hi Bellily,

  I was looking at different ostomy barriers online for myself and found this special Deep Convexity Barrier.  Don't know if it's deep enough for your situation, but if not I'd give them a call and see if they know of a deeper convexity barrier (maybe by a competitor) or could custom make you a deeper barrier. Making their mold deeper may be a very simple thing for them to do.....can't hurt to ask. What I find interesting is that there is a market for deeper convexity barriers, so you are not alone, and what you need may already be out there. Let me know how you make out.

https://www.marlenmfg.com/

 

Regards,

Bob

Reply by Bellily, on Tue Dec 17, 2019 10:45 pm

hi bob, thank you for this tip.

alas, i was on that very page a week or so ago, requested that very sample, but what they sent was different, not the same spherical shape but as all the others are, this flat space with convexity on the edges.  i also don't think they're any deeper - the one you sent a link to, not the one i actually got - as the mio deep convexity in which my stoma still pulls down and out of. 

but there's the revision-to-the-revision to focus on, that plus ultra-belting-pouching until that happens.  ct on friday, lift off shortly thereafter i hope.

 

thank you - for noticing something that might work for someone else while you're dealing with your own pouching dilemma.  may your weepy skin dry its eyes and give your skin a rest.

Reply by PETey.13, on Mon Jan 06, 2020 10:05 pm

Bellily, You need to have a special "funnel" professionally made by a prosthetics clinic. An impression needs to be made of your stoma area. This will be similar to what a dentist does when fabricating dentures. Alginate or silicone paste is introduced into the stoma crater. This impression will form a negative of the wound. This negative is then used to make a stone positive of your wound. Using the stone positive, a technician, under the direction of a doctor, then fabricates a "funnel" that perfectly fits around your stoma. Contact a facial prosthetics clinic, since the staff are experts in dealing with delicate tissues.

Reply by Bill, on Tue Jan 07, 2020 2:09 am

Hello pETey13./Bellily.

I am presently up to the stage of waiting for the caste to set before making a silicone mould of the stoma. 

I would definitely advise getting someone else to help with the first part of the process, as it was difficult to work on myself. The frame shifted so that the stoma has been caste to one side, but I'll try to get this right on the second attempt. 

The casting has come out with lots of creases on the skin area, like when you have your hands in water for too long. However, these can be smoothed over once the caste is set (two days).

One of the other problems was that when the alginate was poured, the stoma retracted, so I'm not sure how good a fit the silicone will be. I'm not giving up on this process, as it seems to have great potential. 

When and if I master the process, I'll let you know the results. 

Best wishes

Bill

Reply by Bellily, on Tue Jan 07, 2020 6:52 am

good luck with this, bill.

the trouble for me with molds has been two-fold:  first, the stoma moves a lot, like the ab skin being the ocean surface and the stoma being caught in the turbulance below; so i "guessed" on my mold, got it pretty accurate, but then the second problem: getting the silicone to stick to my skin.  using an extra adhesive didn't work - the cement/s didn't stick to the silicone, and the adapt med adhesive made the silicone gooey plus gave me a skin reaction (it really hurt).  how do we make our own hydrocolloid??

i'm scheduled for a revision of the revision on 2/3, and i'm praying that it doesn't make matters worse.

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